Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I want to share my MG experience if I may. I'm so isolated here I'm my area my condition was rather new for a lot of my nurses and therapists so it was difficult getting comparative information from anyone aside from my specialist.
April 4 Started with a droopin left eyelid that after 4 days, went shut. I was on the road working out of country when it occurred, and was confident I didn't stroke or anything like that. Day 6 facial numbing and tongue started loosing feeling and use. About the same time I experienced difficulty breathing when trying to sleep. had to sleep sitting up. Day 8 decided enought was enough and asked one of my crew to drive me to hospital. U.S. Healthcare with Canadian Blue Cross coverage works well. I spent four days in the stroke unit, barraged by battery of MRIs, CTScan, ultrasounds, and all determined I had no blockage, tumours, or damage. One specialist suspected Ptosis early in my time with them and wanted to draw spinal fluid to run tests. Around this time my tour was ending and crew were due to head back home next day...
A senior neurologist said that there was no need for a spinal tap, a special blood test could be administered but results would take several days. This way I could travel home and continue diagnosis at home in Canada. At this time he strongly suspected MG.
Day 14 we are home, great difficulty eating and sleeping. Finally was able to see my Family DR. On day19, and arranged for me to see specialist on day 25. In the meantime I was to report to emergency if experienced a crisis. I had no idea what to expect if that were happening. Meanwhile eating was minimal, swallowing almost impossible, sleeping because of my weak breathing muscles was restricted to sitting upright.. I was becoming exhausted mentally and physically. I was quite heavy and losing almost 2 Lbs a day.
Got into specialist and he immediately ordered a series of tests to further confirm before starting with treatment. Started with Mestinon and kept me in emerge overnight to see my reaction. No problems, sent home for two weeks on 3x Mestinon per day then assess.
By day 30 I spiralled into a hole. Couldn't take any more of the exhaustion and was having considerable side effects with over salivating from Mestinon. Breathing was weak and shallow, major weight loss, no sleep for weeks, haven't eaten in weeks, I was shutting down.
Went to emerge and was admitted. Spent firrst 4-5 days modifying meds uping Mestinon but started having greater salivation problems, getting weaker, hookup to IVs full time, rubinol to counter saliva, periodic mixture of Tylenol and gravol for pain and nausea.
What was keeping me out of ICU was my repository therapist. If I could blow 2 litres I was to be taken down. The night I crashed was a night I refused to blow the RT test. Just didn't have anything left. All she needed to know.. Off to ICU. Chest X-rays showed pneumonia settled in, started antibiotics, I was in a bad state (guess I found out what a crisis was). I needed breathing assist, hooked me into a BPAp and if that didn't work it was on to a respirator. The technician masked me up and dialled in volumes and pressures comfortable for me and I drifted off immediately into the first solid sleep in 4-5 weeks. My wife watched me peacefully sleep with great relief.
The rest from then on was a climb ... Did 5 IVIG ... And upped Mestinon. Slooooowly began feeling and experiencing small changes. Then I started prednisone started with 40 and worked up to 80mg day, where I am now. Taking Mestinon every 3 hrs, and 3 other minor drugs to help with side effects. Also supplementing with 1000mg calcium and ensure daily.
Spent 5 weeks in hospital, have been out now 2 weeks. My first appointment is tomorrow with my neurologist since my stay.
I'm in such a great place now comparatively speaking.
Eye is open and double vision almost gone [95%] Even back driving now.
I'm still careful eating. Must be mindful chewing and small bites. Water with almost every bite. Takes me 3-4 times as long as anyone else to eat.. I'm good with it!
When I sleep I sleep well, but most nights inexperience more of a throat phlem than saliva as a side effect. Will keep me awake till 2-3 am but eventually subsides and sleep easily after these night episodes.
Breathing is unrestricted, but strength and endurance is easily challenged and weak when I stress. Heat I find really slows me and I feel it in my breathing. I just go find a shady spot and rest a bit.
One of my biggest challenges is my speech... Probably the slowest to return. I just tell folks who I meet for first time I will get very nasally in a few minutes... And I usually do. Rest will relieve it but fails me quickly.
I'm hoping to continue to see further progress, haven't really had a set back since leaving hospital. Only side effects are salivation and some challenges with bowel movements. Every day I see a new milestone and noticable improvement.
I was hoping for a quick pill for this.... Wrong.. It's a slow and careful process and sometimes you need to set back befor moving forward.. I did. There is no one med plan for this... Everyone will be different.
But in the end I'm so thankful for where I am now compared to a couple months ago. I accept I will have a new normal, I probably never return to where I was. While walking laps in the ward during my stay, I see so many who don't have what I have now. This isn't as bad as I have been expecting... Acceptance is paramount, don't set bar too high, ask for help, ask questions, educate yourself on this condition, and watch for the little accomplishments, the big ones should they occur...embrace them. I am thankful on the success of my current recovery, knowing that things can change. I'm better prepared now,
I
April 4 Started with a droopin left eyelid that after 4 days, went shut. I was on the road working out of country when it occurred, and was confident I didn't stroke or anything like that. Day 6 facial numbing and tongue started loosing feeling and use. About the same time I experienced difficulty breathing when trying to sleep. had to sleep sitting up. Day 8 decided enought was enough and asked one of my crew to drive me to hospital. U.S. Healthcare with Canadian Blue Cross coverage works well. I spent four days in the stroke unit, barraged by battery of MRIs, CTScan, ultrasounds, and all determined I had no blockage, tumours, or damage. One specialist suspected Ptosis early in my time with them and wanted to draw spinal fluid to run tests. Around this time my tour was ending and crew were due to head back home next day...
A senior neurologist said that there was no need for a spinal tap, a special blood test could be administered but results would take several days. This way I could travel home and continue diagnosis at home in Canada. At this time he strongly suspected MG.
Day 14 we are home, great difficulty eating and sleeping. Finally was able to see my Family DR. On day19, and arranged for me to see specialist on day 25. In the meantime I was to report to emergency if experienced a crisis. I had no idea what to expect if that were happening. Meanwhile eating was minimal, swallowing almost impossible, sleeping because of my weak breathing muscles was restricted to sitting upright.. I was becoming exhausted mentally and physically. I was quite heavy and losing almost 2 Lbs a day.
Got into specialist and he immediately ordered a series of tests to further confirm before starting with treatment. Started with Mestinon and kept me in emerge overnight to see my reaction. No problems, sent home for two weeks on 3x Mestinon per day then assess.
By day 30 I spiralled into a hole. Couldn't take any more of the exhaustion and was having considerable side effects with over salivating from Mestinon. Breathing was weak and shallow, major weight loss, no sleep for weeks, haven't eaten in weeks, I was shutting down.
Went to emerge and was admitted. Spent firrst 4-5 days modifying meds uping Mestinon but started having greater salivation problems, getting weaker, hookup to IVs full time, rubinol to counter saliva, periodic mixture of Tylenol and gravol for pain and nausea.
What was keeping me out of ICU was my repository therapist. If I could blow 2 litres I was to be taken down. The night I crashed was a night I refused to blow the RT test. Just didn't have anything left. All she needed to know.. Off to ICU. Chest X-rays showed pneumonia settled in, started antibiotics, I was in a bad state (guess I found out what a crisis was). I needed breathing assist, hooked me into a BPAp and if that didn't work it was on to a respirator. The technician masked me up and dialled in volumes and pressures comfortable for me and I drifted off immediately into the first solid sleep in 4-5 weeks. My wife watched me peacefully sleep with great relief.
The rest from then on was a climb ... Did 5 IVIG ... And upped Mestinon. Slooooowly began feeling and experiencing small changes. Then I started prednisone started with 40 and worked up to 80mg day, where I am now. Taking Mestinon every 3 hrs, and 3 other minor drugs to help with side effects. Also supplementing with 1000mg calcium and ensure daily.
Spent 5 weeks in hospital, have been out now 2 weeks. My first appointment is tomorrow with my neurologist since my stay.
I'm in such a great place now comparatively speaking.
Eye is open and double vision almost gone [95%] Even back driving now.
I'm still careful eating. Must be mindful chewing and small bites. Water with almost every bite. Takes me 3-4 times as long as anyone else to eat.. I'm good with it!
When I sleep I sleep well, but most nights inexperience more of a throat phlem than saliva as a side effect. Will keep me awake till 2-3 am but eventually subsides and sleep easily after these night episodes.
Breathing is unrestricted, but strength and endurance is easily challenged and weak when I stress. Heat I find really slows me and I feel it in my breathing. I just go find a shady spot and rest a bit.
One of my biggest challenges is my speech... Probably the slowest to return. I just tell folks who I meet for first time I will get very nasally in a few minutes... And I usually do. Rest will relieve it but fails me quickly.
I'm hoping to continue to see further progress, haven't really had a set back since leaving hospital. Only side effects are salivation and some challenges with bowel movements. Every day I see a new milestone and noticable improvement.
I was hoping for a quick pill for this.... Wrong.. It's a slow and careful process and sometimes you need to set back befor moving forward.. I did. There is no one med plan for this... Everyone will be different.
But in the end I'm so thankful for where I am now compared to a couple months ago. I accept I will have a new normal, I probably never return to where I was. While walking laps in the ward during my stay, I see so many who don't have what I have now. This isn't as bad as I have been expecting... Acceptance is paramount, don't set bar too high, ask for help, ask questions, educate yourself on this condition, and watch for the little accomplishments, the big ones should they occur...embrace them. I am thankful on the success of my current recovery, knowing that things can change. I'm better prepared now,
I
You sure had an abrupt and rough introduction to MG! Glad to hear things are going better. The IVIG will likely have to be repeated regularly and you probably go on some medication to lower your immune system. In MG that is the problem--bad antibodies being produced.
Although it looks rough at first, most MG folks get medications figured out to control MG and do gain their lives back. Some take longer time, but many get this in balance in 6-12 months.
Good Luck
Russ
We are here for you; this group is full of wonderful snowflakes who will share their knowledge and experiences.
It does get better as you go; being dx and receiving treatment is a step in the right direction.
Look for a MG support group in New Brunswick, or maybe even an organization like the MDA. That may lead to other useful info, or may put you in touch with other MG people in NB.
Did your blood test show positive for MG? Was it the AChR test?
MG seems to run up and down, along peaks and valleys. Not always at the bottom or top, either. Sometimes, just cruising along at mid-level, for periods of time. Some people are lucky, remission comes along. Other people have a hard fight everyday.
Your case sounds like it got pretty severe, pretty quickly - something that is also not uncommon. But you are on the rebound, good to hear. Stay as well rested as possible, including your eyes. Are you still using a Bi-pap, to help with sleep at night? Maybe when things clear up. (I'm considering a Bi-pap, myself.)
Where were you, when you were first hospitalized? Were you in Maine or New England? I'm on Casco Bay - near Portland Maine.
Feeling isolated, with a rare disease.
Yup you will hear that a lot, with most MG'ers, actually anyone with a rare condition. There are no whiners here, just a lot of tough people, looking for knowledge. Knowledge is power, and power is found in numbers.
Glad you discovered this group.
Plug Myasthenia Gravis Canada, into your search engine. There are several groups there, I'm not sure how active they all are, or how genuine they all are. In the States, there is the MGFA. There are also MG pages on Facebook. Some FB pages are good, some are less than good.
It's true: there is no single treatment plan, everybody is different, there are different types of MG.
There are also non-MG conditions, that can have symptoms like MG. All of them - require different treatments. Even within MG, some of the standard drug therapies, not all of us can tolerate them. (I cannot take Mestinon, but that is unusual.) (Yes, Mestinon can be a problem with excess saliva.)
Your treatments have included Mestinon, Prednisone, and IVIG. In a crisis, there is also Plasmapheresis.
Cellcept and Imuran are some long-run therapies. And there are newer long-run therapies, like Rituxan. (Cellcept, Imuran, Rituxan: are useful, replacing long-term, high-dose prednisone).
And there are many other meds & treatments too (which can sometimes make you feel like a running experiment).
Were you in Maine or New England, when you were first diagnosed? Glad you had a good insurance experience. Get supplemental insurance, if you can - for hospital, doctors, procedures. Co-pays, personal medical bills - can add up very quickly.
The big-cities (Boston, Q.C. and Montreal) - still seem to be where the more severe cases end up. That's something to keep in mind.
I eventually had to be referred to an excellent neurological clinic, inside a mid-size Boston hospital, where additional autoimmune conditions were found. The big-city Neuro also saved my life, during a 4-month hospital stay.
Good job, hang in there, keep us posted - Ross
We understand.
When I had my crisis eating thick liquids worked the best. Believe it or not...water is the hardest for us to swallow. It takes a lot of muscles to swallow water.
I question your salivating. Severe mg symptoms caused me to not be able to swallow my saliva.
Mestinon was my best friend. I took 90 every 3 -4 hours round the clock.
There is so much hope.
I was on a respirator and now if you were to be with me neither of us would recognize the mG.
I hope you will see benefits from the high dose of prednisone soon.
It takes quite a while but you will be better.
When we are in bad shape exercise can be our enemy.
I think you would really benefit from more mestinon.
Hope you have better days soon. You will .
They were quick to confirm here and was lucky they did. Got my bill the other day from the NY hospital... 48K for a 3.5 day stay. ".fantastic care while I was there too. My insurance covered it all.
Ann... For me it seems the prednisone is the key drug for me. I asked him to keep me at 420 mg a day of the Mestinon but we are trying to find my base line and wants to see how I react with the change... Will it be better or worse we will see in a week or two.